Jo Cavallo

For Susan Brownell, there was never a question that she would help care for her two parents and two stepparents when they all became ill with cancer over an eight-year period starting in 1992. Both of Brownell’s parents remarried shortly after divorcing when she was just 4 years old.

"If the ties are strong and there has been a reasonably good adaptation to the new family structure, you're going to find the adult kids taking care of a [stepparent] who may not be their blood relative, but a realtive by virtue of having become that."

More serious disagreements can revolve around who will be charged with making health care decisions for the patient, especially if end-of-life care becomes necessary, and the patient can’t make those decisions. 

To prevent these kinds of conflicts from surfacing in the first place, having legal documents, such as an advance directive, in place is key. If there are no documents in place and the patient’s wishes are unclear, experts suggest holding a family meeting to try and come to a mutual decision about who will be responsible for medical and financial decisions, and even to assign duties to various family members to help in the everyday care of the patient.

“The difficulty is that these are emotionally charged situations,” says Davey, “and it’s hard for family members to maintain a sense of objectivity and detachment that lets you have a reasonable, rational conversation about what’s best for the person who actually needs care. If everyone can get those ideas on the table in a nonthreatening, nonjudgmental way, that’s important.”

If that effort fails, it may be necessary to engage the help of a hospital social worker, mental health professional, or clergy member to mediate the conflict.  

Coping with the responsibility of caring for an ill stepparent as part of a blended family is largely uncharted territory for society, but experts say it can provide new opportunities to improve nontraditional family &shy;relationships. 

In blended families, Holland says, “if the ties are strong and there has been a reasonably good adaptation to the new family structure, you’re going to find the adult kids taking care of a [stepparent] who may not be their blood relative, but a relative by virtue of having become that.”

Read a blog from editor-at-large Kathy LaTour on how the new family dynamic is changing caregiving at 

www.curetoday.com/blog/kathylatour/family_dynamic

“My stepfather raised me,” says Brownell, 61. “I would see my father and stepmother a couple of times a year, so I really didn’t know my dad or stepmother very well.”

Still, when Brownell’s father was diagnosed with colon cancer shortly after her mother died from lung cancer, Brownell didn’t hesitate to make the 130-mile journey from her home in Sparta, Wisconsin, to help care for him. The experience, she says, not only brought her closer to her father but also gave her new insight into her stepmother as well. 

“My stepmother was never one to show affection easily, but she changed so much after my father’s illness. She took very good care of him, and I came to admire and respect her for all she did for him, because it was a tough job,” says Brownell.

While Brownell’s commitment to care for her parents and stepparents when they became ill was unwavering, research is showing that a sense of obligation of adult children toward aging and sick parents and stepparents is becoming increasingly rare. And a high divorce rate in the U.S. is often cited as the reason. Although data from the Centers for Disease Control and Prevention’s National Center for Health Statistics put the divorce rate in the U.S. at around 43 percent, some researchers say that figure is actually hovering closer to 50 percent. Plus, statistics show, two-thirds of remarriages end in divorce.

All of these familial shakeups are raising the societal question of what is the responsibility of adult children from these unions who find themselves in the position of having to care for multiple sets of ailing, divorced parents and stepparents? The answer can be as complicated as the situations themselves. 

Major factors that come into play include living far away from parents, not being able to get time off from work, and simply not being able to afford the financial costs of providing full-time or part-time care. (Find articles addressing these issues at 

.) And recent research is providing some other clues as well.

Experts say the age of the children when parents remarry after a divorce or the death of a spouse plays a role in how willing the grown children are to care for the parents and stepparents when they become ill with cancer and other diseases. 

“The same marital transition affects every child in the family differently, and when in that child’s life it occurs can greatly affect whether it’s a positive or negative event,” says Adam Davey, PhD, director of the doctoral program in health ecology at Temple University in Philadelphia, and lead author of a recent study, published in the journal 

, that looked at parental marital transitions and assistance between generations. The longer a child has had a relationship with a stepparent, says Davey, the more that person becomes a “naturalized” parent to that child. But even that scenario doesn’t guarantee that stepchildren will want to provide care for their ailing stepparent when the time comes. 

“We also found that stepchildren were only half as likely as biological children to provide assistance to parents. There are a lot of situations we come across where there just aren’t very clear norms or social expectations about what someone ought to do. Stepchildren and stepparent relationships [are] one big area,” says Davey.

However, being the biological child of an aging and ailing parent is no guarantee that he or she will automatically feel obliged to care for that parent, says Lawrence Ganong, PhD, co-chair and professor in the department of human development and family studies at the University of Missouri in Columbia.

“One of the least ambiguous situations is when a divorced [biological] parent, who walked off into the sunset when the child was young, reappears at some point later and says, ‘I need some help,’ ” says Ganong, who has conducted research on the obligations to stepparents acquired later in life. “That’s really not an issue for [adult children]. They don’t feel as much guilt about saying ‘no’ because the closeness is not there; there’s no sense of ‘I have to pay this person back.’ ”

Despite the potential emotional landmines some caregivers face, as Susan Brownell found, one of the often overlooked benefits of caregiving is the opportunity to forge better relationships with estranged loved ones. “Caregiving is not just all a burden,” says Jimmie C. Holland, MD, the chair of psychiatric oncology at Memorial Sloan-Kettering Cancer Center in New York City. “When you’re dealing with someone who’s ill, there’s a chance for closeness that you might not have had if the person had stayed healthy.”

There’s also the added benefit of being able to create a caregiver team by enlisting the aid of step- and half-siblings and other extended family members who can provide some relief and a bigger financial and emotional resource pool for the primary caregiver.

But caregiving can also create conflict among blended family members. When a serious illness like cancer strikes, “the real issue is how well a family has blended,” says Holland. “For example, how well a new spouse interacts with the adult stepchildren can be a very contentious issue because the adult children may harbor fears that the new spouse is going to take all the money, or that their mom or dad is going to give away the house to the newcomer. So there is a lot of possibility for conflict.”

Articles

Navigating the emotional and practical hurdles of caring for parents and stepparents. 

Uncertain Obligations

No matter your caregiving situation, know your limitations, say experts, and give yourself permission to say “no” if the task becomes too great. “There is only so much one person can do, and everyone needs to recognize that and look at what his or her own limits are both in terms of emotional makeup and personal situation,” says Suzanne Mintz, president and CEO of the National Family Caregivers Association (

Mintz suggests creating a community of caregivers to share the responsibilities. Lotsa Helping Hands (

) is a good place to start. The web-based resource allows caregivers to develop a network of family, friends, neighbors, and colleagues to coordinate meals and schedule rides to medical appointments. Team Convene, a program offered by Gilda’s Club (

; 888-445-3248), offers similar assistance.

For caregivers who need help managing the financial burden, Family Caregiving 101 provides a listing of financial resources at 

www.familycaregiving101.org/help/financial.cfm

, and the Patient Advocate Foundation offers a state-by-state directory of &shy;programs and services that assist patients with housing, utilities, food, and transportation to medical treatment at 

Some states offer a Cash & Counseling program to Medicaid recipients who work with counselors to determine how their personal budget is spent. Patients can decide where to spend the funds, such as paying a friend or family member for caregiving. In addition, for caregivers who are covering the cost of treatment and co-pays, a number of organizations, nonprofits, and drug companies offer drug and patient assistance programs (find a comprehensive listing at 

Create a community of caregivers to help share the responsibilities. 

Getting Help

In January, the Government Accountability Office issued a report to Congress chastising the Food and Drug Administration for not moving fast enough in implementing stricter regulations in its approval process of Class III medical devices.

Class III-designated devices, which support or sustain life and carry the highest level of risk to consumers, undergo the most rigorous regulatory review and include products such as MammoSite, a radiation therapy system used in early-stage breast cancer patients, heart valves, and silicone gel-filled breast implants. (The da Vinci Surgical System, used in the treatment of prostate and other cancers, is classified as a Class II device, which like a Class III device gets close regulatory scrutiny but does not require premarket approval.)

Unlike new drugs, not all medical devices require human trials and may go directly from laboratory to marketplace. But before Class III devices can be cleared by the FDA for public use they must go through either a 510(k) premarket notification process, which determines whether a new device is substantially equivalent to another legally marketed product, or the stricter PMA (premarket approval) process, which requires that the manufacturer provide evidence that the device is safe and effective. 

The GAO report faulted the FDA for not applying the PMA process to all Class III devices, which it was instructed to do in 1990 after a law was passed requiring the FDA to either reclassify Class III devices to a lower designation or establish deadlines for when Class III devices would have to undergo the PMA process.

Some medical experts wonder, however, whether requiring that all Class III medical devices be subjected to the more time-&shy;intensive—and costlier&mdash;PMA process will stall progress and delay getting new devices to clinicians and ultimately to patients. 

“There is no [approval] system that is going to be 100 percent perfect,” says Howard M. Sandler, MD, chair of radiation oncology at Cedars-Sinai Medical Center in Los Angeles and spokesperson for the American Society for Radiation Oncology. “Manufacturers have a strong interest in having their devices go through the speedier and less expensive 510(k) process, and the FDA does its best to apply the rules in a uniform way. And in a minority of cases, the end result may not be ultimately satisfactory. But the vast majority of medical devices are approved appropriately and I worry that a dramatic tightening of the device approval process will lead to a dramatic reduction in device innovation.”

Sandler cites the controversy surrounding MammoSite, which was cleared under the 510(k) premarket notification process to treat early-stage breast cancer in just five days instead of the six weeks typically required for conventional radiation therapy. Using the standard for new drug approval, which could take 10 to 15 years to complete, new devices like MammoSite, says Sandler, might never reach patients.

“Maybe in some abstract way to get to the truth we would require that kind of clinical trial to be completed and analyzed before a medical device is approved. On the other hand, there’s reasonably good evidence in carefully selected women that MammoSite works as well as six weeks of external beam radiation therapy.”

According to the FDA, most of the Class III devices in question have either already gone through the PMA process or have been reclassified. Peper Long, FDA spokesperson in the Center for Devices and Radiological Health, says the agency is now putting together the procedural steps to notify the remaining manufacturers to submit a PMA for their Class III devices or risk reclassification of their products.

The bottom line: Be an informed health consumer, says Sandler, and ask your doctor about the safety and effectiveness of any medical device prescribed for you.

The Government Accountability Office recently chastised the FDA for not moving fast enough in implementing stricter regulationsin approving Class III medical devices.

Medical Devices Face Stricter Regulations

The validity of performing monthly breast self-exams to find cancerous tumors early enough to improve survival rates was brought into question again this past summer when an updated review of a 2003 analysis was published in

The review examined two population-based studies comparing breast self-exams with no intervention and found that self-exams didn’t reduce a woman’s chance of dying from breast cancer. In fact, says the review, it may do more harm than good by increasing the number of unnecessary biopsies performed and the level of emotional stress women experience when they find benign lumps.

The report looked at merged data from randomized trials of 388,535 factory workers in Shanghai, China, and St. Petersburg, Russia. (Although women from Moscow were included in data from a 1999 report, they were excluded from the final results published in 2003.) In both studies, women were trained to perform breast self-exams. The updated 

 review of the studies concluded that “these trials did not find a beneficial effect of screening in terms of improvement in breast cancer mortality.” And, said the report, the women who were randomized to the breast self-examination arm of the trial were nearly twice as likely to have a breast biopsy—3,406 biopsies with benign results were done in the screening groups compared with 1,856 in the control groups.

“That’s the downside to doing breast self-exam in the general population, because women will find more lumps and then they’ll have to go through all the diagnostic procedures,” says David Thomas, MD, DrPH, epidemiologist at Seattle’s Fred Hutchinson Cancer Research Center and lead author of the Shanghai study. “We found in our study that the women in our instruction group had a lot more benign lumps and biopsies than the women in the control group, and yet the practice of BSE didn’t improve their chances of surviving breast cancer.”

Although the recent report made headlines when it was published in July, doubts about the benefits of breast self-exams have been brewing for years. In 1998, the National Comprehensive Cancer Network, an alliance of 21 of the world’s leading cancer centers, released guidelines stating that self-exams were an option rather than a standard of care for women who get annual mammograms by age 40 and clinical breast exams by age 25, because there was no evidence that self-exams increased breast cancer survival.

In 2001, the Canadian Task Force on Preventive Health Care issued a report saying doctors should stop advising women between the ages of 40 and 69 to perform breast self-exams. It was a review of these and other reports that led the American Cancer Society in 2003 to stop recommending that all women routinely perform breast self-exams and instead make it optional.

Recommending breast self-exams was a carryover from the days before mammography, when it seemed logical that a woman could find her own lump and get medical attention, says Debbie Saslow, PhD, director of breast and gynecologic cancers at the ACS. “But the findings of [various] studies were so discouraging in terms of not seeing any benefit, the ACS said we’re going to let women decide whether they want to do BSE or not.”

The ACS guidelines state that women should understand the benefits and limitations of breast self-exams, and be more aware of how their breasts normally look and feel and consult with their physician if they notice changes. But other medical experts disagree.

“Right now, we have the doctor’s examination, mammography, and a woman’s self-exam. I object to abandoning the one that is the most convenient and least costly,” says Marisa Weiss, MD, director of breast radiation oncology at Lankenau Hospital in Wynnewood, Pennsylvania, and founder of Breastcancer.org. “And the other consideration is that many women don’t have access to medical care, to mammography, and about 20 percent of breast cancers are detected by physical exam alone. So if you tell women not to do a breast self-exam then you’re missing the opportunity for them to have the earliest form of detection in their setting.”

So, should women perform monthly breast self-exams? Saslow says it’s up to individual women to make the decision based on their comfort level as long as they’re aware of the limitations of breast self-exams and the possibility of increasing the chances of a biopsy for benign findings. “But please get annual mammograms starting at age 40, or an MRI in addition to a mammogram starting at age 30 if you have a [genetic predisposition or] strong family history of breast cancer,” says Saslow.

The validity of performing monthly breast self-exams to improve survival rates is again being questioned.

Jo Cavallo

Uncertain Obligations

Getting Help

Medical Devices Face Stricter Regulations

Do Breast Self-Exams Save Lives?

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